Should I Tell You the Why? Is it Chronic Oversharing?

The complicated and often humorous world of invisible illness.

I can tell you so much about my trifecta of chronic illnesses.

Most of us who have dealt with them for years can. I’m diagnosed with Postural Orthostatic Syndrome (POTS), Chronic Epstein Barr Virus (CEBV), and Mast Cell Activation Syndrome (MCAS). I’m a hot, soupy, but very educated mess of conditions and I bet I can give a pretty good TED talk about each of them.

But I don’t want to bore or overshare. No need to open the kimono too far, but how far is too far, really? Don’t we all struggle with this? Whether it’s family drama, money or relationship challenges, how much is too much?

My family lives in a townhouse in a lovely north Seattle neighborhood. We live behind an active bus stop, which means we get a lot of foot traffic, as does the coffee shop next door.

When I visit the coffee shop — a busy, delightful corner cafe — I get the same damn thing every time. Not because I love it or it’s my favorite treat but because it’s literally the only thing I can drink.

What do I get? An iced cold brew. Even in December, when it’s raining here and the cold seeps deep into your bone marrow. I’ve noticed other customers raising their eyebrows at my order and once, when the cafe was quiet, a customer who was sitting at a table said, “Don’t you freeze to death with that? All I want is a hot cup of coffee in this weather.” I shrugged and opened the door to leave, but he wasn’t done. “No, really, it’s freezing out there!”

I smiled at him and told him that I just lived a few steps away so I was fine. “Have a nice day,” I said, and waved as I left.

Last week, I ordered my usual, handing over my tumbler for the barista to fill. “I admire your dedication to the cold brew,” he said.

And this time I felt okay sharing the why behind my order. At least some of it. “I have a chronic condition where hot drinks can make me break out in hives and nobody wants that,” I said.

“Oh, wow, that’s crazy,” he said as he opened the tap on the cold brew, then resumed his conversation with his colleague. I perused the pastries while I waited and then went on with my day.

These interactions got me thinking about who I share with and how much I tell them. With invisible chronic conditions, it’s a fine balance between having to launch into a ten minute explanation of the weird symptoms of the condition(s), wondering if the person will think you’re making it up, or not explaining enough and leaving the person wondering if you’re just crazy.

Long COVID is bringing POTS, MCAS, and CEBV to the general public

The unfortunate but good-for-me news is that at least one of my conditions is becoming more mainstream (which means more research dollars, yay!). We’ve all heard of Long COVID but what is less well-known is what it actually is, beyond a frustrating constellation of symptoms, including bone crushing fatigue, dizziness, brain fog, rashes, and post-exercise malaise, to name just a few.

Studies are showing the what behind Long COVID as a mix of post-viral conditions activated by COVID, including Postural Orthostatic Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), and Chronic or Reactivated Epstein Barr (EBV). To be fair, the studies to date have been small but solidly directional, with larger studies currently in the works.

Anecdotally, more and more people are joining my Facebook support groups, with their symptoms starting post-COVID. And their doctors are noticing the connection — at least the ones who know of and understand the conditions. Many doctors, cardiologists, and neurologists aren’t aware of them and sometimes tell patients “it’s all in their head.” This is less than helpful when you can barely move or think and are told you’re depressed, anxious, and psychosomatic.

Find a new doctor.

Functional doctors or naturopaths tend to be more educated on POTS, MCAS, and CEBV.

So what ARE these conditions?

See, I haven’t even told you what they are yet! It takes forever to explain my chronic conditions to people, as I do have all three. I think this is why I’ve learned to tier my explanations depending on 1) how frequently I interact with the person and 2) if I’m spending enough time with them that I may flare in their presence.

Here are the Cliff Notes:

• POTS: A malfunction of your autonomic system, or what controls the “automatic” things your body does like blood flow, digestion, and breathing. Symptoms include dizziness, vertigo, headache, “coat hanger” pain in my upper back, temperature sensitivity, low gut motility, fatigue and post-exertional malaise.
• CEBV: EBV is the virus that causes mono and 95% of the population carries it. I have the misfortune of being in the 2% whose body can’t keep it quiet without a lot of daily attention. Symptoms include swollen lymph nodes, fatigue, headache, body aches and pains.
• MCAS: This is definitely my most visibly dramatic one. Basically, my body cannot manage histamine levels so I have to be careful with anything that increases histamine — exercise, high-histamine foods, allergies. It’s akin to making sure I don’t overfill a cup of water to where it spills, which requires a fine balance of rest, exercise, medication, and mindful eating. Symptoms include rashes, hives, temperature sensitivity, tingling body parts, depression / suicidal ideation, difficulty breathing, and anaphylaxis.

Many of the symptoms overlap, making it harder to diagnose and manage them. I’m lucky to have an amazing functional doctor who I’ve worked with for several years now. I also have a rescue kit for my MCAS that includes Benadryl shots and epi pens. Because of this, I wear a medical bracelet when I’m not with friends or family that states, “MCAS, use epi.”

So to my neighbors wondering why I’m still drinking iced coffee in December — I’ll give you the short answer to the why, but I also have a medium length answer and a long answer if you prefer.

Or a very, very long answer.

Hi! My name is Diane and I’m a mom, writer, content marketer, and outdoor enthusiast navigating this chaotic and often ridiculous world while dealing with POTS, chronic EBV, and overactive mast cells.

If you have questions about these conditions or my experience with them, please feel free to contact me in the Comments section. It takes a village.

And if you enjoyed what you read here, consider buying me a coffee. Gotta stay caffeinated!